So sorry to hear that Claire had the reaction to anesthesia, but it's good they've been keeping here somewhat sedated because that is giving her body a little bit more time to heal before she's fully aware of any possible frustrations. That extra healing time is good for her because I think she may be a little stronger a few days post-op than she would have felt if she'd been alert the first day post-op and have to face the news about the change in procedure type.
When I read Wendy's post where she mentioned Claire being thrust into menopause, it reminded me of something I experienced during my hospital stay that I didn't figure out until I was about to be discharged. For days and days I kept having the nurse's or whom ever to change the setting on the thermostat, and I couldn't figure out why they couldn't keep the temperature at a constant level for me. First I'd be freezing, and not long after I would be having to take the covers off, and even my robe. Of course I finally figured out it was because of the hysterectomy, and it didn't have anything to do with the hospital heating/cooling system. So finally here comes my suggestion and it's something I would have taken along with me had I thought about it, and that is a hand fan. I actually make fans that I used to use when my son played in the youth baseball program in our community, because here in Alabama it can be in the 100 degree range before the beginning of June. They always had our teams name on them and all the boys names, etc., it was lots of fun. You can possibly find something like what I'm talking about as some businesses hand them out to customers, like funeral homes, banks, athletic concerns. I don't know if things would be the same there as here, but you might ask someone. Whether or not you find a fan, just being able to tell her why she goes from being hot to being cold in a matter of minutes may help her. I was certainly frustrated myself, but once I realized the cause I had to laugh because I hadn't figured it out earlier. I think dealing with a surgical procedure and knowing you have cancer is a lot to have going on in your brain and not understanding some of the other things is understandable, but finding the answer makes you realize you're not nuts!
Don't hesitate to ask the hospital staff, doctors, nurse's etc., any questions you might have, the only stupid question is the one you don't ask. Ask them for emotional support for Claire as well, especially since she's had the reaction, and also the change from the expected procedure. They're there to help both of you, but you have to ask for it.
Tell Claire we're all pulling for her to have a speedy recovery, even though the beginning of it has been rough. We've got you both in our prayers and we know where you're coming from, maybe not blow for blow but we've been there.
Thanks for your replies Claire is still very sleepy and had quite a bad allergic reaction to the anaesthetic.She is still unaware that the surgery did not go as planned and in the HDU under sedation.
We have had an initial path report that shows no cancer in lymph nodes and grade three T 2B TCC tumours within the bladder muscle so our fears of possable spread look unfounded. This is the first good news for a while .
I second what has already been said. Claire has been in my thoughts and prayers too. Please let her know we are thinking of her and sending hugs her way.
My husband was the best support I had during my radical cystectomy and recovery. So, just by being by Claire's side, you are already doing more than you realize to ease her pain and potential devastation regarding the procedure.
I know from my communication with Claire that she was somewhat apprehensive about the anesthesia prior to surgery. So, I'm sorry to hear that she did not tolerate it well. Having cancer and this type of surgery is very overwhelming. Rest assured that your love and support will mean a great deal to her. Give her lots of hugs, tell her you love her and remind her she is and always will be beautiful... in time, she will heal physically and emotionally.... Take care of yourselves! We're here for you too!
All my best, Angela
Please send Claire our love. I have been thinking about her every single day. She is most fortunate to have a loving husband like you clearly seem to be. I wish her a speedy recovery and hope that, in the future, if she wishes to undergo a different procedure that will be possible. Hugs.
I'm sorry to hear that things didn't go as Claire would have preferred. Your loving attitude will go very far in helping her to accept things, she's very lucky to have you.
Sometimes procedures can be modified at a future date. It depends. If Claire was not handling anesthesia then it was a question of life or death. I'm sure she would choose life.
Every study that has ever come out on the subject of comparing quality of life with an ostomy vs. QOL with an internal pouch or neobladder has concluded that people all claim to be satisfied with their quality of life no matter what procedure they get! Sounds weird, I know, but it proves to me that human beings are adaptable creatures with a strong survival instinct.
Your wife just got a new shot at life. Nothing will ever be the same but it never is once the diagnosis is cancer...the end point is to eradicate the cancer, and if that is what has been accomplished the chance is very big that she'll be cancer free from now on, with an opportunity to get old, as if there never was any cancer.
The biggest hurdle is over, but there is still another one to come and that's the pathology report. It takes a week or so usually to get the results back. In truth this is the most important part of the surgery.
Again, having a loving partner there beside her during this process-because it's a process, things will change for the better as she heals-is THE most important factor, everyone should be so lucky as to have someone like you there when they wake up.